|
Copyright © by Jodi Bassett September 2007 on www.ahummingbirdsguide.com
The terms Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) are not synonymous. However, to understand anything at all about ‘CFS’ one must first be aware of the history of M.E.
A brief history of Myalgic Encephalomyelitis up to 1988
The illness we now know as Myalgic Encephalomyelitis is not a new illness. M.E. is thought to have existed for centuries. (Hyde 1998, [Online]) (Dowsett 1999a, [Online])
One of the most fundamental facts about M.E. throughout its history is that it occurs in epidemics. This fact conveys, among other things, the infectious and contagious nature of the disease (Hyde 1998, [Online]). The usual incubation period of the virus infection involved is 4-7 days. There is a history of over sixty recorded outbreaks of the illness going back to 1934 when an epidemic of what seemed at first to be poliomyelitis was reported in Los Angeles. As with many of the other M.E. outbreaks the Los Angeles outbreak occurred during a local polio epidemic.
The presenting illness resembled polio and so for some years the illness was considered to be a variant of polio and classified as ‘Atypical poliomyelitis’ or ‘Non-paralytic polio’ (TCJRME 2007, [Online]) (Hyde 1998, [Online]) (Hyde 2006, [Online]). Many early outbreaks of M.E. were also individually named for their locations and so we also have outbreaks known as Tapanui flu in New Zealand, Akureyri or Icelandic disease in Iceland, Royal Free Disease in the UK, and so on. M.E. was also known as ‘Atypical multiple sclerosis’ at one time, because of the similarities between M.E. and MS (TCJRME 2007, [Online]) (Hyde 1998, [Online]).
A review of early M.E. outbreaks found that clinical symptoms were consistent in over sixty recorded epidemics spread all over the world (Hyde 1998, [Online]). Despite the different names being used, these were repeated outbreaks of the same illness. It was also confirmed that the epidemic cases of M.E., and the sporadic cases of M.E. each represented the same illness (Hyde 2006, [Online]) (Dowsett 1999a, [Online]).
In 1956 the name Myalgic Encephalomyelitis was created. The term was invented jointly by Dr A Melvin Ramsay who coined this name in relation to the Royal Free Hospital epidemics that occurred in London in 1955 - 1957 and by Dr John Richardson who observed the same type of illness in his rural practice in Newcastle-upon-Tyne area during the same period. It was obvious to these physicians that they were dealing with the consequences of an epidemic and endemic infectious neurological disease (Hyde 1998, [Online]) (Hyde 2006, [Online]). The term Myalgic Encephalomyelitis means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation (Hyde 2006, [Online]). As M.E. expert Dr Byron Hyde MD writes:
The reason why these physicians were so sure that they were dealing with an inflammatory illness of the brain is that they examined patients in both epidemic and endemic situations with this curious diffuse brain injury. In the epidemic situation with patients falling acutely ill and in some cases dying, autopsies were performed and the diffuse inflammatory brain changes are on record (2006, [Online]).
In 1957, the Wallis description of M.E. was created. In 1959 Sir Donald Acheson (a former UK Chief Medical Officer) conducted a major review of M.E. (Hooper et al. 2001, [Online]). In 1959 Dr. Donald Henderson (a CDC epidemiologist) and Dr. Alexis Shelakov (a NIH epidemiologist), published a comprehensive review paper in the New England Journal of Medicine describing several outbreaks. Dr. Henderson noted: ‘The pattern of the epidemic, the absence of any common exposure factors and the high incidence among medical and hospital personnel were consistent only with an infectious disease transmitted from person to person’ (McLaughlin 2004, [Online]).
In 1962 the distinguished neurologist Lord Brain included M.E. in the standard textbook of neurology. In recognition of the large body of compelling research that was available, M.E. was formally classified as an organic disease of the central nervous system in the World Health Organisation’s International Classification of Diseases in 1969 with the code G.93.3. In 1978 the Royal Society of Medicine held a symposium on Myalgic Encephalomyelitis at which M.E. was accepted as a distinct entity. The symposium proceedings were published in The Postgraduate Medical Journal later that same year. The Ramsay case description of M.E. was published in 1981 (Hooper et al. 2001, [Online]).
Myalgic Encephalomyelitis from 1988 to the present
Modern technology has now served to confirm and to detail the meticulous clinical and scientific observations made about M.E. before 1988, and the name Myalgic Encephalomyelitis has stood the test of time scientifically for more than 50 years. What we now know about Myalgic Encephalomyelitis includes that;
M.E. is a systemic acutely acquired illness initiated by a virus infection which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. (Hence the name Myalgic Encephalomyelitis.) The CNS is diffusely (and measurably) injured at several levels, these include the cortex, the limbic system, the basal ganglia, the hypothalamus and areas of the spinal cord and its appendages. This persisting multilevel central nervous system (CNS) dysfunction is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process. Myalgic Encephalomyelitis causes a loss of normal internal homeostasis. The individual can no longer function systemically within normal limits.
M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle. Thus M.E. symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage.
M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) – and an associated injury of the immune system – by the chronic effects of a viral infection. M.E. affects the body systemically. Even minor levels of physical and cognitive activity, sensory input and orthostatic stress beyond a M.E. patient’s individual post-illness limits causes a worsening of the severity of the illness (and of symptoms) which can persist for days, weeks or months or longer. In addition to the risk of relapse, repeated or severe overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death in M.E.
M.E. is a distinct, recognisable disease entity that is not difficult to diagnose and can in fact be diagnosed relatively early in the course of the disease (within just a few weeks) – providing that the physician has some experience with the illness. Although there is as yet no single test which can be used to diagnose M.E. there are a series of tests which can confirm a suspected M.E. diagnosis. Virtually every M.E. patient will also have various abnormalities visible on physical exam. If all tests are normal, if specific abnormalities are not seen on certain of these tests (eg. brain scans), then a diagnosis of M.E. cannot be correct. M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio). There is good evidence to suggest that M.E. is caused by an enterovirus; the same type of virus which causes polio (Bassett 2007, [Online]).
This is not simply theory, but is based upon an enormous body of mutually supportive clinical information which has been published in prestigious peer-reviewed journals all over the world and spans over 70 years, Confirmation of this hypothesis is now supported by electrical tests of muscle and of brain function (CT, MRI, SPECT and PET scans) and by biochemical and hormonal assays, and so on (Chabursky et al. 1992 p. 20) (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Hyde 1992 pp. x-xxi) (Hyde & Jain 1992 pp. 38 - 43) (Hyde et al. 1992, pp. 25-37) (Dowsett et al. 1990, pp. 285-291) (Ramsay 1986, [Online]) (Dowsett & Ramsay n.d., pp. 81-84) (Richardson n.d., pp. 85-92).
But despite the long history of M.E., and the overwhelming irrefutable evidence that M.E. a distinct organic neurological disease, the perception and treatment of M.E. by the public, the medical profession, the government and the media has changed profoundly since 1988.
- Despite the fact that there are more than 64 different symptoms authentically documented in M.E., and that M.E. has a long history including evidence of virally induced damage to the brain and of outbreaks (and much more) the term M.E. is often used interchangeably with the terms ‘fatigue’ and ‘chronic fatigue’ – as if the distinct neurological illness M.E. and the symptom of fatigue were exactly the same.
- The outbreaks of M.E. are virtually never mentioned, nor the long history of M.E.
- The
WHO classification of M.E. remains unchanged but is ignored by most doctors and governments.
- Despite the abundance of evidence spanning many decades which disproves the theory, it is now often claimed that some level of psychiatric causation of M.E. has been scientifically proven, even though the relevant studies were conducted not on people with M.E., but instead on non-M.E. patients selected based on the presence of ‘fatigue.’
- People with M.E. are often denied basic welfare entitlements, and many do not have access to basic medical care. It is also very common for people with M.E. to be mistreated as psychiatric patients, to be sectioned against their will, forced to participate in graded exercise programs (which are at best useless and at worst cause severe or permanent relapse or even death) or in cognitive behavioural therapy (which is also at best useless and at worst extremely harmful). Many people with M.E. are simply left at home to die alone.
- It is common to read written material on M.E. in the media and produced by government etc. which does not include even one legitimate fact about the illness and is made up entirely of myths and propaganda.
The symptom of ‘chronic fatigue’ and the distinct neurological illness M.E. each have a different; cause, symptoms, aetiology, pathology, response to treatment, long and short term prognosis – and World Health Organization classification. People with the symptom of chronic fatigue and those with authentic neurological Myalgic Encephalomyelitis share few if any similarities.
The suggestion that these two patient groups could somehow represent the exact same patient group and be able to be studied interchangeably is clearly absurd, yet somehow this view has gained widespread acceptance by the media, the public and the medical community and is also reflected in government policy.
So how did this happen?
The creation of many different definitions of ‘Chronic Fatigue Syndrome’ is how a particular group of psychiatrists (and others with similar vested interests) have superficially ‘bridged the gap’ as it were between these unrelated patient groups so that they can fraudulently be discussed – to those who are not aware of the subterfuge involved – as if they were one and the same.
What is Chronic Fatigue Syndrome? How is it defined?
The new name CFS and the CFS case definition was created by the CDC in the US in 1988 by a board of eighteen members (many of them psychiatrists); few of which had studied either an epidemic of M.E., or any patients with the illness. This new criteria failed to select patients using any past or current relevant research or lab work, excluded the cardinal symptoms and signs of M.E. and instead focused almost entirely on ‘fatigued persons.’
CFS was created in a response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not exist. The three more experienced members of the board refused to sign the final document and withdrew themselves from the (CDC) definitional committee because the proposed new name and definition for the illness were just too different from the M.E. with which they were so familiar (Hooper et al. 2001 [Online]).
In the two most commonly used definitions of CFS – the US 1994 Fukuda (or CDC) definition and the 1991 UK Oxford definition – the only essential symptom required for the diagnosis of CFS to be made is ‘chronic fatigue.’ All either of these definitions ‘define’ is a heterogeneous population of sufferers from misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but ‘fatigue’ (Hooper 2003a. [Online]).
Despite the fact that it was an outbreak of M.E. which these CFS definitions were created to define the vast majority (an estimated 95% at least) of the research and articles available today which use the term CFS are not in any way concerned with, or relevant to, Myalgic Encephalomyelitis patients – yet these ‘CFS’ studies are what is used to determine the treatments that people with M.E. are recommended, or forced, to participate in. The small amount of research done under the name CFS which does relate to M.E. is also virtually always tainted by CFS propaganda. The creation of ‘CFS’ is an abuse of basic science. Despite the high level of disability and the vast number of patients involved, governments around the world are currently spending $0 a year on M.E. research.
So why were a group of psychiatrists allowed to redefine a disease of infectious origin? Why was the study of Myalgic Encephalomyelitis allowed - or indeed designed - to become so outrageously skewed?
There was an enormous rise in the incidence of Myalgic Encephalomyelitis in the late 1970s and the 1980s and so it was at this time that certain psychiatrists and others involved in the medical insurance industry (on both sides of the Atlantic) began their campaign to reclassify the severely incapacitating and discrete neurological disorder known as M.E. as a psychological or ‘personality’ disorder; in order to side-step the financial responsibility of so many new claims (Marshall & Williams 2005a, [Online]). As Professor Malcolm Hooper explains:
In the 1980s in the US (where there is no NHS and most of the costs of health care are borne by insurance companies), the incidence of ME escalated rapidly, so a political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored… To the serious disadvantage of patients, these psychiatrists have propagated untruths and falsehoods about the disorder to the medical, legal, insurance and media communities, as well as to government, resulting in the withdrawal and erosion of both social and financial support (2003a, [Online]) (2001, [Online]).
This is the reason why the charade that M.E. could be a psychiatric or behavioural disorder or even a ‘aberrant belief system’ involving mere ‘fatigue’ exists; not because there is good scientific evidence – or any evidence – for the theory, or because the evidence proving organic causes and effects is lacking; but purely because such a view is so financially and politically convenient and profitable on such a large scale to a number of extremely powerful corporations and government departments (Hooper et al 2001, [Online]).
So what does a diagnosis of CFS actually mean?
There are now more than nine different definitions of ‘CFS.’ All each of these flawed CFS definitions ‘define’ is a heterogeneous (mixed) population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states which have little in common but the symptom of fatigue.
The fact that a person qualifies for a diagnosis of CFS, based on any of the CFS definitions (a) does not mean that the patient has Myalgic Encephalomyelitis, and (b) does not mean that the patient has any other distinct and specific illness named ‘CFS.’ A diagnosis of CFS – based on any of the CFS definitions – can only ever be a misdiagnosis. All a diagnosis of ‘CFS’ actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease. As Dr Byron Hyde M.D. explains, the patient has:
a. Missed cardiac disease, b. Missed malignancy, c. Missed vascular disease, d. Missed brain lesion either of a vascular or space occupying lesion, e. Missed test positive rheumatologic disease, f. Missed test negative rheumatologic disease, g. Missed endocrine disease, h. Missed physiological disease, i. Missed genetic disease, j. Missed chronic infectious disease, k. Missed pharmacological or immunization induced disease, l. Missed social disease, m. Missed drug use disease or habituation, n. Missed dietary dysfunction diseases, o. Missed psychiatric disease (2006, [Online]).
Under the cover of ‘CFS’ certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E. But M.E. and ‘CFS’ are NOT the same. As M.E. expert Dr Byron Hyde MD explains:
Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis. It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Any disease process that has major criteria, of excluding all other disease processes, is simply not a disease at all; it doesn't exist. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes.
Patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion. The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state.
Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would have told the students to search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything (2003, [Online]) (2006, [Online]).
The bogus disease category of ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and unrelated fatigue syndromes and other fatiguing illnesses. But people with M.E. are not the only patient group to be negatively affected by this politically-modified science. It is common for patients with a variety of different illnesses with fatigue as a symptom to be misdiagnosed as having ‘CFS.’ Arbitrarily lumping these disparate patient groups together only hinders each of the patient groups involved in their battle to regain their health.
There are also a variety of negative impacts on doctors and the public (and others) caused by the ‘CFS’ insurance scam. The only groups which gain from this ‘CFS’ confusion are insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.
Is renaming, refining or sub-grouping ‘CFS’ the way forward?
Sub-grouping ’CFS,’ refining the bogus ‘CFS’ definitions further or renaming ‘CFS’ with some variation on the term M.E. as some groups are suggesting would achieve nothing and only create yet more confusion – which the vested interest groups involved would continue to take advantage of, to the detriment of patients.
The problem is not that ‘CFS’ patients are being mistreated as psychiatric patients – for a start, some of those patients misdiagnosed with CFS actually do have psychological illnesses. CFS is made up of people with depression (and various other psychological illnesses), multiple sclerosis, athletes over-training syndrome, Fibromyalgia, various self limiting post-viral fatigue syndromes (caused by glandular fever/mono, hepatitis and so on), candida, chronic Lyme disease, burnout, cancer and many more entirely unrelated and already very well-defined conditions. To say that all of these very different conditions – including M.E. – are each subgroups of ‘CFS’ is just absurd. There is no such distinct disease/s as ‘CFS’ – that is the entire issue, and the vast majority of patients misdiagnosed with CFS (an estimated 75% at least) DO NOT have M.E. and so have no more right to that term (or a variation of it) than to ‘cancer’ ‘diabetes’ or ‘multiple sclerosis.’
The distinction must be made between terminology and definitions. The terminology is often used interchangeably, incorrectly and confusingly and new ill-defined umbrella terms such as ‘ME/CFS’ ‘ME-CFS’ ‘CFS/ME’ ‘CFIDS’ and others just increase this confusion. However, the DEFINITIONS of M.E. and CFS are very distinct, and it is these definitions which are of primary importance.
- Myalgic encephalomyelitis
is an acquired infectious neurological disease initiated by a virus infection which is characterised by (scientifically measurable) damage to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis (as well as cardiac insufficiency; a form of heart failure). The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease that can always be verified by objective testing; if all tests are normal, then a diagnosis of M.E. cannot be correct. There are also abnormalities on physical exam in M.E. M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that affects adults and children. Fatigue is not a defining symptom of M.E., nor even an essential symptom of M.E. There are more than 64 M.E. symptoms. People with M.E would give anything to instead only be severely ‘fatigued’ or tired all the time.
- Chronic Fatigue Syndrome
is a man-made construct created in the US in 1988. It is not a distinct disease, but a mere diagnosis of exclusion (a wastebasket diagnosis) based on the presence of the symptom of fatigue. CFS cannot be diagnosed until after 6 months have passed. There are no characteristic abnormal tests or physical signs of illness associated with CFS. If serious abnormalities are found on testing, a person no longer qualifies for a diagnosis of ‘CFS.’ (The fatigue in ‘CFS’ is ‘medically unexplained.’) The onset of ‘CFS’ may be gradual or acute. A diagnosis of CFS does not mean that a person has any distinct disease, including M.E. In essence, every diagnosis of CFS can only ever be a misdiagnosis. ‘CFS’ is made up of people with a vast array of unrelated psychological and non-psychological illnesses with little in common but the symptom of fatigue.
The primary problem is not the name CFS. This is only a very minor part of the problem. The real issues are:
- The DEFINITIONS of CFS, which define exactly nothing, and allow any number of very different patient groups to be unscientifically treated as if they were one and the same because of the flawed CFS disease construct.
- The involvement of financial and political vested interest groups in what should be a scientific discussion.
- The inappropriate involvement of psychiatrists in treating many different non-psychiatric/psychological illnesses.
- That all of the existing science is being purposefully ignored by those in positions of power
- That most of the ‘science’ on CFS being produced is seriously flawed and biased, and that often the vested interest groups involved have determined the outcomes of this ‘research’ before the actual studies have been conducted etc.
- That the media is colluding with the government and other vested interest groups in keeping the public ignorant of the facts surrounding M.E. and the difference between M.E. and ‘CFS.’
- That there is no such disease/s as ‘CFS’ and so every diagnosis of CFS is a misdiagnosis.
Sub-grouping ‘CFS’ or renaming (as some CFS groups are proposing) would only waste another 20 years or more and ensure that the relentless abuse, mistreatment, neglect and needless deaths continue. This proposal would not further the interests of people, with M.E., nor any of those patients misdiagnosed with CFS. Yet again, only vested interest groups will benefit.
Changing the name of the bogus disease construct of ‘CFS’ to some variation on the term M.E. is not at all a step in the right direction. If successful, this move will actually be a huge step BACKWARD for everyone with M.E. and all those patients misdiagnosed with CFS. It will make it harder than ever for anyone to distinguish between ‘CFS’ and authentic M.E., and for those misdiagnosed with CFS to be able to receive a correct diagnosis and treatment finally. It must not be allowed to succeed. The groups proposing this action do NOT speak for, or represent, the M.E. community.
The ‘CFS name change proposal’ seems nothing more than a political stunt; designed to appease (justifiably) angry patients and make them feel like something is being done and that progress is being made finally – but not to actually effect any real change.
The proposal that the name of ‘CFS’ should be changed to a variation on the term M.E. – despite the fact that the term is completely scientifically inaccurate for the vast majority of the patients involved and that this term has already been TAKEN by a very well-defined (and scientifically sound) patient group for over 50 years – merely because it ‘sounds a lot more serious’ makes a mockery of legitimate advocacy, and of science, logic and ethics.
So where do we go from here? How do we stop this abuse of science?
This appalling abuse and neglect of such severely ill people on such an industrial scale is inhuman and has already gone on far too long. The only way forward for M.E. patients and all of the diverse patient groups commonly misdiagnosed with ‘CFS’ – both of which are denied appropriate support, diagnosis and treatment, and may also be subject to serious medical abuse and inappropriate interventions – is that the bogus disease category of ‘CFS’ must be abandoned. The only way forward, for the benefit of society and every patient group involved, is that:
1. The fictional disease category of ‘CFS’ must be abandoned Patients with fatigue (and other symptoms) caused by a variety of different illnesses need to be diagnosed correctly with these illnesses if they are to have any chance of recovery; not given a meaningless Oxford or Fukuda ‘CFS’ misdiagnosis. (Some of the conditions commonly misdiagnosed as ‘CFS’ are very well defined and well-known illnesses and very treatable – but ONLY once they have been correctly diagnosed). Patients with M.E. need to be given this same opportunity.
Patients with depression need to be diagnosed with depression and then treated for depression. Patients with cancer should be diagnosed with cancer and then treated as is appropriate for the kind of cancer they have, and so on. Each of the patient groups involved must be correctly diagnosed and then treated as appropriate based on legitimate and unbiased science involving the SAME patient group.
Physicians who diagnose ‘CFS’ in any patient experiencing new onset fatigue without looking and testing for the true cause of the symptoms do their patients – and themselves – a great disservice. Some of the conditions commonly misdiagnosed as CFS are very well defined and well-known illnesses and very treatable – but only once they have been correctly diagnosed. Some conditions are also very serious or can even be fatal if not correctly diagnosed and managed, including Myalgic Encephalomyelitis. (It is not uncommon for people with cancer – which causes significant fatigue – to be misdiagnosed with CFS and to die needlessly due to a lack of appropriate treatment, for example.)
Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery. This process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won. A diagnosis of CFS – based on any of the definitions of CFS – can only ever be a misdiagnosis. Doctors must return to the age-old medical principals of correct diagnosis (a) careful history, (b) detailed physical examination and (c) appropriate investigation (Hyde 2006, [Online])
2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization (WHO) classification of M.E. as an organic neurological illness must be accepted and adhered to in all official documentations and government policy. There were sound medical reasons for the creation of the name in 1956, and for the classification of the illness by the WHO in 1969; neither of which has changed in the interim. Professor Malcolm Hooper explains:
The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. The currently version ICD-10 lists M.E. under G.93.3 - neurological conditions. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination. (2006, [online])
Despite misleading claims made to the contrary by vested interest groups, there is well-documented evidence of inflammation of the brain and spinal cord in M.E. spanning over 50 years, but it is true that there is no evidence of inflammation of the brain or spinal cord in states of ‘chronic fatigue’ or ‘tiredness’ and other non-M.E. illnesses which may be commonly misdiagnosed as ‘CFS’ (Hooper n.d., [Online]) (Hyde 2006, [Online]).
M.E. is a distinct recognisable entity, with several unique features, which can be diagnosed relatively early in the course of the disease providing the physician has some experience with the illness. M.E. can easily be distinguished from various chronic fatigue states, and other unrelated ‘fatiguing’ illnesses. People with M.E. must be diagnosed with M.E. and treated for M.E., based on research which also involves M.E. patients again, finally.
The M.E. community does not need to wait for official ‘permission’ to renew the name and scientifically and historically correct definition of M.E., these rights exist today (as they have since 1969) under the WHO ICD.
3. People with M.E. must also immediately stop being treated as if they are mentally ill, or suffer with a behavioural illness, or as if their physical symptoms do not exist or can be improved with ‘positive thinking’ or exercise – or mixed in with various non-M.E. ‘fatigue’ sufferers in any way.
People with M.E. must also be given access to basic medical care, financial support and other appropriate services (including funding for legitimate M.E. research) on an equal level to what is available for those with comparable illnesses (eg. multiple sclerosis or Lupus). The facts about M.E. must again be taught to medical students, and included in mainstream medical journals and already practicing physicians must be brought up to speed about M.E. It must be as unacceptable for physicians to be ignorant about M.E. as multiple sclerosis, diabetes or any other common and serious disease. M.E. expert Dr Elizabeth Dowsett explains that:
M.E. Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialised experience about poliomyelitis and associated infections seem to have vanished mysteriously! (2001a, [Online])
Myalgic Encephalomyelitis is a distinct infectious neurological disease – not a problem of medically unexplained ‘fatigue.’ Patients with M.E. must be treated based on the scientific facts, rather than misinformation and falsehoods based on political and financial considerations.
Again, the only groups which gain from the ‘CFS’ confusion are insurance companies and various other organisations and corporations which have a vested financial and political interest in how these patients are treated, including the government.
For the benefit of all of the patients groups involved, the medical community and society at large, the bogus disease category of CFS must be abandoned. There simply is no other logical or ethical solution.
 |
